June is Myasthenia Gravis Awareness Month and while most people have never heard of it I live it every second of every minute of every day! I know that sounds monotonous but there is not a second in the day that I am not effected. I try to keep things from most people by saying “I’m ok” because what does it help or do for me to complain? I. Am. Sick…and there “ain’t no” changing that fact! Myasthenia Gravis is a rare auto immune disease. It is caused by the person’s immune system basically going haywire and attacking the receptors that transmit messages from the nerve to the muscle. People can be effected differently. Most of my weakness occurs between my eyebrows and mid chest. Think about everything between your eyebrows and mid chest that use voluntary muscles. Your eyes, your mouth, your neck, your arms, your throat and your diaphragm. Now blink let’s say 30 times and look in the mirror. Do your eyes look the same? Mine don’t! Now think about turning your head right to left – back & forth about 30 times. If I do that I can’t hold my head up. I can’t lift things like I want, I can’t swing a golf club like I want. Sometimes I can’t eat what I want, (I know you would think I would be skinny but that’s the prednisone I take daily) and sometimes when it’s bad I cannot take a breath deep enough to suck in air. That’s when I have to go to the hospital and that is what I hate the most – being away from my family!
Now that I’ve explained some of it; my progress I’m speaking of is my treatment. Because no two people are alike, no two immune systems are alike. So each person has different treatment that works for them. Finding the right treatment for the right person is like finding a needle in a haystack – made with the big round bale of hay! Currently I take 17 pills a day to keep my body moving and fighting. One of these drugs is a form of chemo that is working to kill my immune system – that’s why I wear a mask. I can’t fight off a cold and heaven help I get a scrape or cut it takes forever to heal! One of the medicine is Prednisone that helps with inflammation and cause what they call a “moon face” – I have got a great round face behind the mask! 😷😉 I also take a medicine called Mestinon specifically made to make those receptors transmit the message to the muscle and I have a Fitbit with alarms set to go off because I take this medicine every 3 hours. If I am late or miss it I simply cannot function. Guess what – I hate taking medicine! How’s that for karma? 😂😂 Then there are several supplements and medicines to help with anxiety because lets face it; when you are out in public and you get to where you can walk or talk or breathe – YOU GET ANXIOUS! And now on to the final step of my treatment is called IVIG or intravenous gammaglobulin which is a blood product. This is what I get when I’m hospitalized but last Saturday I was able to get it at home! Exciting stuff! I worked everyday this week and was able to come home, cook supper and clean my kitchen! That might not seem like much but it is a HUGE step for me! It fighting to gain some normalcy back. It’s telling this disease “you don’t have a hold on me”! It’s making me feel somewhat human again. Most people with MG hide out at home because we never know what to expect when we go out. We can go from 60 to complete stop in a matter of minutes and it stinks!
Please understand that I know God has a plan and it’s perfect! I might have hit a rough patch in life but in 1 Peter 1:7 the Bible tells us of our faith going through a refiner’s fire. The metal goes in a hot fire and comes out more pure with each pass through the fire. God is just making me stronger and purer so that one day I will be face to face worshipping Him and I am perfectly good with that! It doesn’t matter to me what happens here on earth because I know my final destination and it’s exciting!
Thanks for reading!